Teen who spurred progeria research dies at 17

Sam Berns, whose inspiring attitude about having progeria was the subject of the 2013 HBO documentary “Life According to Sam,” died Jan. 10 at his home in Foxborough, Mass., from complications of the rare disease. He was 17.

Leslie Gordon, Sam Berns and Scott Berns are featured in the HBO documentary ‘Life According to Sam.’ Photo courtesy HBO.

It was 1998 when Leslie Gordon and Scott Berns learned their 22-month-old son had progeria, that his life expectancy on average was 13 and there was no research being conducted on the genetic fatal condition characterized by rapid aging.

One year later, with help from friends and colleagues, the family created the Progeria Research Foundation, the only nonprofit dedicated to treating and finding a cure for the disease.

Thanks to the foundation, the LMNA gene that causes progeria was discovered, a test to determine if children have the disease was established, a cell and tissue bank was started and funds were raised for two drug trials.

In 2012, results from the first drug trial showed children improved in at least one of three areas: weight, bone structure and cardiovascular system.

Kaylee Halko, 10, of Monclova participated in that first drug trial. She and Carly Kudzia, 3, of Whitehouse are enrolled in the foundation’s triple-drug trial.

They are two of the 105 children in the world who have progeria, according to the foundation.

“Sam passed away just days before we were set to travel to Boston for Carly’s six-month check of the Progeria Research Foundation’s trial at Boston Children’s Hospital, so we were able to attend Sam’s funeral service before returning home,” said Heather Kudzia, Carly’s mom.

Carly Kudzia of Whitehouse is one of 105 children with progeria worldwide. Toledo Free Press Photo by Joseph Herr

“The service was beautiful and fitting for the amazing young man that Sam was,” she said. “To say the least, we will continue to be moved by Sam and inspired by him to be brave every day.”

The youth who became the face of progeria motivated many. He gave a talk titled “My Philosophy for a Happy Life” last fall at the TEDx conference in Washington, D.C.

“Being brave isn’t supposed to be easy,” he said. “For me, I feel it’s the key way to keep moving forward. So, all in all, I don’t waste energy feeling bad for myself, I surround myself with people that I want to be with, and I keep moving forward. So, with this philosophy, I hope that all of you, regardless of your obstacles, can have a very happy life as well.”

“Sam’s life simply was not long enough, especially given the impact he had on the human race as a whole,” Kudzia said. “I do believe that together, we will get to the cure. And I’m betting that Sam will continue to help us.”